ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2019
A survey of patient and caregiver experience with malignant pleural mesothelioma.
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 4 of them syntheses that pooled it.
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Who cites it
16 citing papers in PubMed, 4 syntheses or guidelines pooled it, 42 citations in OpenAlex.
- Psychological Distress in Patients With Asbestos-Related Diseases and Their Families: A Systematic Literature Review.Psycho-oncology · 2025Pooled it
- Pooled it
- Pooled it
- Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review.Palliative medicine · 2021Pooled it
- The provision of psychological care for patients with mesothelioma and their caregivers: an Italian survey.Frontiers in public health · 2026Article
- Development of Patient and Caregiver Conceptual Models Investigating the Health-Related Quality of Life Impacts of Malignant Pleural Mesothelioma.The patient · 2024Article
- Rediscovering one's own voice in a brief psychoanalytic group intervention aimed at malignant mesothelioma patients and their families.Frontiers in psychology · 2024Article
- Confirmatory validation of a brief patient-reported outcome measure assessing psychological distress in caregivers of malignant mesothelioma patients: the Mesothelioma Psychological Distress Tool-Caregivers.Frontiers in psychology · 2024Article
- Caregivers of patients with malignant pleural mesothelioma: who provides care, what care do they provide and what burden do they experience?Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- Care provided by older adult caregivers to a spouse in active cancer treatment: a scoping review.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Article
- Dying of mesothelioma: A qualitative exploration of caregiver experiences.European journal of cancer care · 2022Article
- Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers.BMJ open respiratory research · 2022Article
- Understanding the Experiences of end of Life Care for Patients with Mesothelioma from the Perspective of Bereaved Family Caregivers in the UK: A Qualitative Analysis.Journal of palliative care · 2022Article
- Preliminary validation of a brief PROM assessing psychological distress in patients with malignant mesothelioma: The mesothelioma psychological distress tool-Patients.Frontiers in psychology · 2022Article
- Improving mesothelioma follow-up care in the UK: a qualitative study to build a multidisciplinary pyramid of care approach.BMJ open · 2021Article
- Differences in health care experiences between rare cancer and common cancer patients: results from a national cross-sectional survey.Orphanet journal of rare diseases · 2021Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
Abstract
backgroundMalignant pleural mesothelioma (MPM) is a rare cancer with poor prognosis. As there is little information on the lived experience of MPM, our aim was to document the experience of MPM patients and their caregivers.
methodsSurveys for MPM patients and caregivers were developed from previous interviews with patients, caregivers, and health professionals, about treatments and decision-making. Participants were recruited from two hospitals, government compensation body, and support groups.
resultsSurvey responses were received from 78 MPM patients and 106 caregivers from January to September 2014. PATIENTS: 85% male, median age 69 years, median time since diagnosis 15 months. Caregivers: median age 68, 91% female, 90% spouse of MPM patient, 95% bereaved. Most participants felt informed about treatment options but only 69% thought all treatment options were discussed. Chemotherapy was discussed most frequently (92-95%); ~80% had sufficient information for decision-making. Decision regarding chemotherapy was made by patient considering doctor's opinion (24%), doctor and patient equally (18%), and doctor (17%). Participants 'agreed'/'strongly agreed' that they made the right decision about chemotherapy (patients 81%, caregivers 60%), but 5% and 16%, respectively, regretted the decision. Most participants received 'sufficient' support (71%). A quarter reported seeing cancer nurse specialists. Palliative care referral: 31% patients, 85% caregivers. Caregivers would have liked to talk to someone by themselves (41%), more time with doctors (30%), psychological support (29%), and clearer information (31%). Bereaved caregivers requested grief counselling (39%) and post-death consultation with specialists (23-25%).
conclusionsSatisfaction with treatment was high, but participants identified need for improved communication and quality information, discussion about all treatments, end-of-life assistance, and caregiver support after the patient's death.
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